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The One Thing I Want You to Remember Now That My Lupus Has Returned


I’ve been hesitant to share this story. I don’t want anyone to worry or be upset. I’m not looking for pity or sympathy. I’m actually not looking for anything. This is more about allowing myself to talk about this, so I can breathe and move forward to heal. It is cathartic for me.

For several years now, my constant companion, lupus, has been sweetly sleeping. In my arrogance, I thought this sleep would be permanent. I’d struggled early in life with this beast and have very much enjoyed the reprieve. Alas, nothing lasts forever.

Janet Beckman

For the last few months, I have been undergoing tests to see why I had a few lab results that came back wonky. I’ve been to two specialists, three hospitals and completed six separate labs. Although I’m not done yet, the results are clear. My lupus has decided to make an encore appearance with a side of kidney disease.

Taking a deep breath, it’s not as bad as it sounds. I’m under the care of a pretty terrific team. I feel completely confident in not only their abilities but also my determination. This situation will improve if for no other reason than I’m too stubborn for it not to.

My hesitancy to share is multifaceted. First, I’ve lost people before when I was sick. I’m not judging or blaming anyone. This stuff gets ugly. It’s not for the weak. And I’m sure I’m even a bigger pain to deal with when I’m not feeling well. So if you’re in my life and this mess is too much for you, it’s OK. As I stated above, I’m not asking for anything. I just need to be able to admit that I have something going on and stop worrying how my medical issues might affect others. After all, it’s happening to me.

Second, I know very well-meaning people will try to give me advice. They’ll tell me what I should or shouldn’t eat. Maybe I should juice. Maybe I should take supplements. Maybe some miracle cure that your neighbor’s aunt’s second cousin told you about is the way to go. Please understand I appreciate any concern about my well-being, but I’m pretty solid in my diet and exercise and sleep plans. None of what is happening is my fault or the result of my own negligence. Remember, I’ve been on this carousel before. I plan to use my prior knowledge and the guide of my trusted medical community to ensure I can exit the ride.

I apologize for any inappropriate jokes I make about this situation. Misplaced and twisted humor is a coping skill that I’ve perfected all these years. I love making jokes at my own expense. It causes laughter and makes me happy, especially if I make someone else feel uncomfortable. Feel free to join in. I can’t go down this road being morose. That doesn’t work for me. Sarcasm, dry humor and generally not taking things too seriously is how this is going to work.

If you are still reading this, thank you. My ADHD meds have worn off and this could be a bit hard to follow. If you are in my life and are gonna stick around for the carnival, get comfy. Ask questions. I’m not shy about this. If you are willing to help out in any way, let me know, but only if you mean it. I don’t need any specific help at this time, but it would be great to know I have people I can count on if I get to a point where I do. And it would be super helpful if that support is genuine.

And lastly, please remember I am still me. I’m still the person you know, and this isn’t going to change that. I will still want to go out and have fun. I will still want to see people and volunteer with the animals. I will still want to do normal people things. I’m not sure how much future treatment might limit that, but I’m not going to be a breakable china doll that you have to be careful with. It will help me a lot just to be treated the same as always, with the understanding that I might just be a little off. 

And finally — educate yourself. Lupus is in my DNA. It’s hard-wired. It’s not something that can be cured, and it will never go away. But you can get treatment, and you can get better. That’s what I’m going to do.

A version of this post originally appeared on Medium.